Hope Is Where The Heart Is: My Battle Against End Stage Renal Disease

Chp 5: Misunderstood

Dealing with peritoneal dialysis had a strong effect on me and my family. Most family members don't understand the daily functions I go through every day. I try to make family gatherings, but my dialysis exchanges makes it difficult. The doctor would restrict me from lifting heavy items that can cause strain. I'm risking an abdominal infection if I go beyond my limitations.

Sometimes I want to feel normal being able to live my life as if nothing was wrong. The main misconception of being on peritoneal dialysis is some people thinking I can't do something. I never asked for help if I needed any I would figure out the answer. The hardest part is explaining to people how important it is to make sure I do my exchanges on time. I can't afford to miss, or skip any treatments because it can be harmful to my body if I made it a habit.

I hated taking phosphate binders which would cause me to eat less since I would get full faster than normal. I take about 22 pills a day (18 phosphorous binders, two blood pressure medications, and two thyroid medications). My doctor explained to me once I receive a new transplant the amount of pills I would take is just as much to make sure the kidney doesn't reject.

I didn't seek pity, or wanted anyone feeling sorry for me I just try to educate others about my condition to help prevent it from happening to anyone. For the most part, I would feel like a burden on my family. I felt like that for my mom since I lived with her she dealt with all the shipments and medications. The amount of boxes with dialysis solution piled up in my living room was pretty intense. The average of boxes in the room was approx. 35 to 50 boxes (a month worth of dialysis solution).

I want to travel outside of the USA to see new sights, and different cultures. These restrictions make it very risky being at the top of the list. I didn't want to miss a call for an opportunity to be transplanted. My nephrologist advised me to stay close to home. If I were to travel I had to make sure that I can be back home in time if I got a call. The furthest I traveled was Las Vegas. I traveled in the car because taking a plane will be a major hassle with my luggage. The amount of boxes containing my solutions are costly. I can't risk losing anything because these are my lifeline. If I were to leave out-of-town for two to three days I would have to prepare the right amount of solution bags.

Dealing with dialysis could be time-consuming, and hard to manage. This takes someone with a lot of patience, and dedication to continue on with treatments. There would be times that I'm happy being alive to being able to see my family and friends. There are times I felt like I don't deserve the pain feeling like I wanted to give up. I took it as a death sentence sometimes by isolating myself from the world even those who I love.

I tell people to live for the good times, but soon as something in life goes wrong only a few can stick it out. I get irritated having a little tube hanging out my belly, but take it all in stride since it keeps me alive. Although I struggle, I try to inspire others who might be in the same situation, or have somebody they know going through the pain.

That's why I say, "They just don't understand", because many might never been in my situation. Some might never thought end stage renal disease can happen to anybody even children as young as two years old. I will never let this disease hold me back.  I hear people telling me I can't do something, or different opinions on how I should live. Somebody might look good on the outside, but there's no idea what's going on with that person on the inside.

The cost of all the materials were mostly covered through my insurance from my job. I'm grateful to be able to still work a full-time position with health insurance that covered most of the treatments. I still dealt with expensive bills that were hard for me to keep up with payments. The medication cost were reasonable especially with the different programs the clinic offered that helped with cutting down on costs making it affordable.

The doctor's visits, outpatient services, x-rays, and ER visits easily put a strain on my pockets. There are some patients who aren't able to work due to not being physically able to cover the costs. I was very lucky that my job wasn't too hard on me physically in order to still work. It isn't easy I can't stop taking my medications because I can't afford it. If I choose not to pay at all that will hurt me in the long run. Health is your wealth and I learned the hard way as I'm paying for the consequences.

The lesson here is to be prepared for anything. People tend to think that they are invincible, but kidney disease can happen to anybody. If you aren't in tune with your health by scheduling check-ups with your doctor it can be crucial. If you don't pay attention to the warning signs your body could be telling you it can be something minor that can become major.